28-02-2018 09:56 PM
Really sorry to hear this Shona and wish you best of luck with your treatment going forward!
I am on my last herceptin and have followed your exact path - altthough I had a mascteomy and reconstruction. It's only last week I realised that i could get a reocurrance in my reconstruction so will need to be really vigilant
24-02-2018 04:32 PM
I don't want to be the voice of pessimism here but I should point out that Herceptin doesn't always guarantee a successful treatment. I've had chemo and 18 herceptin injections for my Her2 positive tumour. My tumour was completely destroyed by the chemo and I had a lumpectomy. The histology confirmed there were no tumour cells left in the tissue and my lymph nodes were all clear. The week before my last Herceptin injection, I was very suspicious that all was not well and I have just been told that the cancer has returned. It has not responded at all to Herceptin. To say I was devastated is an understatement but I also didn't realise there was the possibility that the tumour cells wouldn't respond to Herceptin. I don't recollect that ever being mentioned so I guess I just assumed it always worked. So I'm now back on this roller coaster journey. I really wanted a mastectomy first time round but because my reponse to chemo had been so good, the surgeon talked me out of it. Hindsight is a great thing but sometimes you need to really go with your gut instinct.
11-02-2018 12:41 PM
11-02-2018 12:40 PM
11-02-2018 12:37 PM
Herceptin without Chemo
I’ve read a couple of posts where people have had Electrochemotherapy with herceptin. My cancer is on the chest wall, and i asked about this but was told I could not have E/C
Can someone tell me at which hospital, consultant where someone has managed to get electro chemotherapy alongside herceptin. The treatment at my local hospital has been terrible with very arrogant oncologist who wont even follow me up now. I have to see someone else I know, but so desperately want to find someone sympathetic to my wishes and beliefs
I do not want full dose chemo which is the only thing being offered to be me at the moment
09-02-2018 04:22 PM
Please try and remember that the doctors dont give you chemotherapy for the fun of it, it costs the NHS thousands. The aim is to keep you alive. If they suggest it then go for it. Chemo is not pleasant for any one but it can be done. Side effects vary greatly between people. I had a bad time with it but am still pleased i had it as it has given me a better chance of life. Be grateful it has been offered. 18 doses of Herceptin is not a walk in the park either, you might as well get the whole lot over with, give yourself the best chance possible and get on with life.
09-02-2018 02:28 PM
There have been trials which show that 3 injections (so 9 weeks if 1 every 3 weeks) is as good as the standard 18 injections. In some parts of the world that is what you get.
Also there are trials going on right now in the UK to see of 9 injections so half as much treatment offer the same advantage as the standard 18 injections.
The cost and the fact that it can damage your heart are reasons for giving less. There is not much point in making you free of cancer if you die from a bad heart after all.
So there are lots of very clever people all over the world looking into all of these treatments to see what is the best for most people at a reasonable cost.
09-02-2018 02:17 PM
Herceptin cannot be prescribed without at least some chemo. The reason for this is because chemo was in place long before Herceptin and it was used alongside chemo NOT INSTEAD of chemo when it was being trialled. This was because if it did not work by itself then those women not given chemo would have advanced too far and likely be dead because they would have been given a drug which did not work.
Those were the ethics prevailing at the time and those ethics are still prevailing now. This is because there have not been enough trials of Herceptin alone on sufficient numbers of women worldwide to enable it to be offered without chemo. It might work for early stages but how early? It might work for some age groups or ethnicity's but which ones? It might work if you are triple positive and need tomoxifen (or similar) but it might not. There are too many questions and not enough answers.
The bottom line is they don't know if it works without chemo but they do know that it works with chemo.
05-02-2018 01:42 PM
05-02-2018 01:31 PM
02-01-2018 09:16 PM
I was diagnosed Her2 + with no lymph node involvement. It was aggressive grade 3 so I had EC chemo followed with what was supposed to be 9 weekly paclitaxol but I had an allergic reaction to the 2 nd dose so had 3 x3 weekly Abraxane chemo . I started on Herceptin the day before I started the Paclitaxol chemo and this week I am about to have my last of a total of 18 doses. I had a mastectomy and 3 weeks of radiotherapy too. Everyone responds differently to treatment. You have to trust your oncologist.
06-12-2017 07:43 PM
01-12-2017 02:51 PM
Hi, I was dx with IDC, Her2+, 1.5 cm in left breast and had a lumpectomy. I am curious to know if you did have Herceptin only rx and how the therapy affected you?
Hope you are doing well!
17-10-2017 02:22 AM
I've been looking for anyone who received Herceptin w/o chemotherapy. There is also some research showing 9 weeks of Herceptin has the same results as 1 year, decreasing the negative impact.
Can you please share more? Where are you located?
Thank you so much.
07-07-2017 04:30 AM
I was diagnosed with her2+ Brest cancer I January 2013. I had a bilateral mastectomy. I didn't have cancer in my lymph nodes in July of that year after a lot of discussion and study, I choice herceptin alone gore one year. I had treatments every 3 weeks. I had a great oncologist who spent a lot of time with me going through my option. As of today, I'm doing great. Every person is different and medicine is definitely not an exact science. Trust your gut, get other opinions and, as my doctor told me, stay off of the internet. It will drive you nuts!
18-05-2016 01:53 AM
Hi everyone, I was diagnosed in January, lumpectomy March. I am ER+ and PR+. Interesting about HER2. My biopsy was HER2-. My tumor tested borderline for HER2 (2.1) and my doctor had it retested and it came out 2.4 or positive. This made me so anxious because I thought my treatement would change. My oncologist was set on Herceptin alone for six months. I started reading about Herceptin and as everyone here writes, it is given with chemotherapy. I decided to go for a second opinion at UCLA and was told that I needed chemotherapy with Herceptin. By the way, there are usually websites from the drug companies for the drugs we take and you can look them up on the internet and they usually provide a contact telephone number. Genentech is the maker of Herceptin and I called them and spoke with a pharmacist who told me that Herceptin alone is "off label." I went back to my original oncologist as a courtesy to him to tell him the result of my second opinion. He actually spent an hour with me. He told me that when they were originally researching Herceptin as the treatment for HER2+ tumors, they gave it alone and that Dr. Slamon's patients lived very long after treatment. In addition,the oncologist at UCLA told me that cancer cells are not all the same and some can test positive and some negative (more confusion for patients!) I have decided to have my tumor retested at a different lab and am now waiting for the results. I am a believer in "tried and true" if available. My second opinion oncologist is study driven and depends on statistics and data. Makes sense to me because these studies go through years of testing (usually three phases of study) and then come up with treatments. Why not benefit from this information. I also am afraid of chemotherapy but I am more afraid of the cancer coming back in my liver or my brain. So, if my tumor tests positive again for HER2, I will have chemo, knowing that I've done my best to overcome this. I owe it to myself and my children. Wishing everyone the best,
16-02-2016 05:37 PM
Hello I was diagnosed in November 2014 I am her2 positive so consequently had chemotherapy/ radiotherapy/herceptin which I finished in December my oncologist would not give herceptin without chemotherapy I have not heard of anyone who has been able to have herceptin alone there are some ladies who have been on herception for a long time but if I'm not mistaken these ladies have been diagnosed with secondaries but again I am not sure sorry I can't give you any more info take care love Judi